Sunday, January 22, 2012

There has been a
dramatic worldwide increase in reported cases of autism over the past decade.
Autism is much more prevalent than previously thought, especially when viewed
as a spectrum of disorders (ASD).
According to the CDC, approximately 1 in 110 children in the United States have
an autism spectrum disorder (ASD) or an estimated prevalence of about 1%. The occurrence of autism is also evident in the number
of students with ASD receiving special educational services. Data collected
for the Department of Education indicate that the number of children ages 6
through 21 identified with autism served under the Individuals With Disabilities Act (IDEA) has increased by more than 600 percent, from 42,000 in
1997 to over 250,000 in 2007.

The increase in autism is also reflected in the
frequency of autism-related litigation and court decisions. A recent article
appearing in the Journal of Special Education Leadership (Autism
Litigation Under the IDEA: A New Meaning of “Disproportionality?’) by Lehigh
University professor of education and law, Dr. Perry Zirkel,
explored whether the litigation concerning students with autism is
disproportional to their enrollment in special education programs under IDEA.
Zirkel analyzed 201 court decisions under IDEA that appeared in West’s
Education Law Reporter. He limited the analysis to the overlapping FAPE
(Free Appropriate Public Education) and LRE (Least Restrictive Environment)
categories as previous studies showed them to be the major part of IDEA
litigation. The FAPE category consisted of decisions where the parent
challenged the appropriateness of the child’s individual program or placement.
This category also included cases where the court decided the appropriateness
of the proposed placement as the first step in the tuition reimbursement
analysis. The LRE category consisted of cases where the parents and district
sought different placements, and the court used the test, or set of criteria,
applicable in its federal appellate jurisdiction for determining the LRE.

The study found that the child’s disability
classification was identified as autism in 64 (32%) of 201 FAPE/LRE decisions
analyzed between 1993 and 2008. Autism litigation accounted for an average of
37% from 1997 to 2008, ranging from 6% in the period closest to the 1990
addition of autism to the list of IDEA disability classifications to 39% in the
most recent four year period 2005-2008. Most importantly, Zirkel found that
when comparing the litigation percentage with the autism percentage in the
special education population for the period 1993 to 2006, the ratio was
approximately 10:1. Overall, the FAPE/LRE court cases are over 10 times more
likely to concern a child with autism than the proportion of children with this
disability in the special education population.

The study suggests that the reasons for this
disproportionality (or overrepresentation) of children with autism in FAPE/LRE
litigation are multifaceted. An initial explanation concerns the severity of
the disability and the resulting emotional stress placed on parents/caregivers
and families. Another explanation may involve “cost.” For example, children
with ASD typically receive a significantly higher number of different special
education and related services than students with other disabilities. As a
result, the average per-pupil expenditure for special education services for
school-age children with autism is often more than for other IDEA disability classifications.
This relative cost represents high stakes for both parents and districts and
may contribute significantly to the motivation for litigation (e.g., the number
of tuition reimbursement cases in the FAPE/LRE cases for autism). A third
contributing factor may be the recent attention given to autism compared to
other IDEA disability classifications together with the complexity of the
disorder itself. The media attention given to autism and emergence of advocacy
groups have also increased parents’ knowledge, but often popularize treatments
that are not supported in the scientific literature and/or viable in
educational contexts. As Zirkel comments, “…with the underlying mutual motives
of high costs and methodological controversy, it is not surprising that the
parents of children with autism would be more prone to litigation than the
parents of children with other disabilities.”

This investigation has several important (and practical)
implications. For example, school district administrators should pay particular
attention to providing effective evidence-based interventions and programs for
children with autism and to establishing effective communications with their
parents. Parent-professional communication and collaboration are key components
for making educational and treatment decisions. On-going training and education
in autism are also important for both parents and professionals. Educators and
support professionals who are trained in specific methodology and techniques
will be most effective in providing the appropriate services and in modifying
curriculum based upon the unique needs of the individual child. Given the
limited success of many school districts in addressing this complex disability,
school officials must also be prepared to address the expected complaints and
grievances from parents of children with autism. At this point, special
education leaders should investigate the use of various alternate dispute
resolution mechanisms such as mediation and IEP facilitation. As Zirkel concludes,
“Although such steps are appropriate with all parents, especially with those of
children with disabilities, these results suggest that, without such priority
extra efforts, the likelihood of the parents of students with autism filing for
an impartial hearing to challenge the IEP and persisting through this costly
and cumbersome adversarial process to a court decision will remain
disproportionally high.”

Zirkel, P. (2011). Autism
litigation under the IDEA: A new meaning of “disproportionality?” Journal of
Special Education Leadership, 24, 92-103.

Dr. Wilkinson is an award winning
author. His work was honored with a gold medal in the 2011 Next
Generation Book Awards Education/Academy Category and finalist awards for the
2011 National Association for Special Educational Needs
(NASEN) Educational Needs/Academic Book of the Year and 2010 National Best
Book Awards. He can be reached at http:bestpracticeautism.com

Sunday, January 15, 2012

One of the most widely
used observation instruments for the assessment of autism is the Autism
Diagnostic Observation Schedule (ADOS) (Lord, Rutter, DiLavore, & Risi,
2008). The ADOS is a semistructured assessment of social interaction,
communication, play, and imaginative use of materials for individuals who may
have autism or other autism spectrum disorder (ASD), also referred to as
pervasive developmental disorder (PDD). The goal of the ADOS is to provide a
hierarchy of “presses” (social structures) that elicit behaviors in
standardized contexts relevant to ASD.

Use of the ADOS requires
clinical training and practice in observation and scoring, as well as
administering the standard activities. Clinical experience related to ASD and
skill in working with children is recommended. It should be noted that the ADOS
classification system does not assign a diagnosis. The ADOS has thresholds for
social interaction, communication and communication-social interaction (total).
An individual may reach the threshold on all three scales but not receive a
clinical diagnosis of ASD, because of late presentation of difficulties or no
restricted/repetitive behaviors or interests. The authors stress the importance
of using the ADOS in conjunction with a developmental history, corroborating
information from other sources, and the use of clinical judgment (Lord et al,
2008).

Administration and Scoring

The ADOS is standardized
in terms of the materials used, the activities presented, the examiner’s
introduction of activities, the hierarchical sequence of social presses
provided by the examiner, and the way behaviors are coded or scored. The ADOS
consists of four “modules,” each of which can be administered in 30-45 minutes.
The appropriate module is selected and administered depending on the
individual’s verbal ability. Module 1 is used for children who are preverbal or
have single-word language. Module 2 is appropriate for individuals with phrase
speech abilities. Module 3 is used for children and adolescents who are
verbally fluent. Verbally fluent adolescents and adults are assessed with
Module 4. More than one module can be administered if the examiner determines
that a more or less advanced module is appropriate. The manual provides guidelines
for selecting the most appropriate module and general instructions for
administration and scoring and interpreting an individual’s results.

ADOS classifications are
based on specific coded behaviors that are included in a scoring algorithm
using the DSM-IV diagnostic criteria, resulting in a Communication score, a
Reciprocal Social Interaction score, and a Total score (a sum of the
Communication and Reciprocal Social Interactions scores). ADOS items regarding
play and stereotyped behaviors are also coded but are not included in the
diagnostic algorithm due to the difficulty in accurately assessing these
characteristics in a limited period of time (Lord et al., 2008). Behaviors are
coded using a 0- to 3-point coding system, with a 0 indicating that the behavior
is not abnormal in the way specified in the coding description, 2 indicating a
definite difference, and a 3 indicating that a behavior is abnormal and
interferes in some way with the child’s functioning. Scores are compared with
an algorithm cut-off score for autism or the more broadly defined ASD in each
of these areas. If the child’s score meets or exceeds cut-offs in all three
areas, they are considered to meet criteria for that classification on the
measure. An ADOS autism classification requires meeting or exceeding each of
the three thresholds (social, communication, social-communication total) for
autism. If thresholds for autism are not met, an ADOS classification of ASD is
appropriate when the three ASD thresholds are met or exceeded. In all cases,
the ASD thresholds are lower for ASD than those of autism (Lord et al., 2001,
2008).

Psychometric Properties

The psychometric data used
in the derivation of the diagnostic algorithms were obtained from individuals
diagnosed with autism, pervasive developmental disorder not otherwise specified
(PDD-NOS), and non-spectrum disorders in order to maximize diagnostic
agreement. Individuals with a diagnosis of Asperger’s Disorder were not
included in the validation sample (Lord et al., 2008). The manual provides a
range of sensitivity and specificity data across modules for Autism and ASD vs.
non-spectrum disorders. The instrument has sensitivity in the upper 90% range
and specificity in the upper 80% to lower 90% range (Lord et al., 2008). The
ADOS was very effective in discriminating individuals with either autism or ASD
from those with non-spectrum disorders, while differentiation of autism and ASD
resulted in specificities of .68 to .79. Agreement between raters for
diagnostic classification when assessing individuals with autistic disorder,
ASD, and non-spectrum disorders ranged from 81% to 93% for the four modules.
Internal consistency for all domains and modules ranged from .47 to .94. The
lower results were found for stereotyped behaviors and restricted interests in
module 3. Test-retest reliability indicates excellent stability for the “Social
Interaction” and “Communication” domains, and for their combined total,
together with good stability for the “Stereotyped Behaviors and Restricted
Interests” over an average period of nine months. In total, there seems to be
significant evidence for sensitivity and specificity for the ADOS in
differentiating children with autism and ASD from children with non-spectrum
disorders (Lord et al., 2001, 2008).

Research

Various studies have
examined the effectiveness of ADOS as it is used in clinical practice. For
example, Mazefsky and Oswald (2006) examined the diagnostic utility and
discriminative ability of the ADOS using a clinical population of 75 children
referred to a specialty diagnostic clinic over a 3 year time span. They
reported 77% agreement between ADOS classification and team diagnosis, with
most discrepancies being in autism versus ASD. The authors note that their
results (lower sensitivity) likely reflect the participation of children who
present for assessments in common clinical practice. In contrast, the symptom
presentation of the children used in the original studies to develop the
psychometric properties of the ADOS included “prototypical” representations of
the disorders and excluded those with questionable diagnoses. This suggests
that clinical expertise and experience with children with ASD is an essential
supplement to the ADOS and other assessment instruments for the less
“‘clear-cut” cases often seen in typical practice.

A current study also
investigated the diagnostic validity of the ADOS in a clinical sample (Molloy,
Murray, Akers, Mitchell, & Manning-Courtney, 2011). ADOS classifications
were compared to final diagnoses given to 584 children referred for evaluation
for a possible ASD in a children’s medical center. Sensitivities were moderate
to high on the algorithms, while specificities were substantially lower than
reported in the original ADOS validity sample. The authors concluded that the
higher number of false positives was likely attributable to the composition of
their clinical sample which included many children with a broad range of
developmental and behavioral disorders. The results of this study also suggest
that clinical populations for which the ADOS is regularly used may be
substantially different from the research samples on which it was normed. As a
result, it is especially important that the ADOS not be used as a “stand-alone”
assessment so as to minimize misclassification in clinical settings where there
are children with many other developmental or behavioral disorders.

The role of the ADOS in
the assessment of ASD in school and community settings has received attention
as well. The perceived advantages and disadvantages of the ADOS were examined
via a national survey of practicing school and clinical psychologists
(Akshoomoff, Corsello, & Schmidt, 2006). Perceived advantages of the ADOS
included its strength in capturing ASD-specific behaviors and the standardized
structure provided for observation, while diagnostic discrimination and
required resources were the most commonly identified disadvantages. Respondents
listing advantages of the ADOS indicated that it captured ASD behaviors, both
generally and specifically, and that it was a good measure for identifying
behaviors that are difficult to observe or probe in other situations.
Respondents indicated that a disadvantage of the ADOS is that it tends to over
classify other diagnostic groups as ASD and does not discriminate well within
ASD subgroups. Of those that indicated resources as a disadvantage, nearly all
indicated time of administration as a disadvantage.

Conclusion

The Autism Diagnostic
Observation Schedule (ADOS) is one of the few standardized diagnostic measures
that involves scoring direct observations of the child’s interactions and
accounts for the developmental level and age of the child. It has the most
empirical support among observation-based diagnostic assessment procedures for
autism and is recommended in several best practice guidelines as an appropriate
standardized diagnostic observation tool (National Research Council, 2001;
Wilkinson, 2010). The ADOS offers the practitioner a standardized observation
of current social-communicative behavior with excellent interrater reliability,
internal consistency and test–retest reliability on the item, domain and
classification levels for autism and non-spectrum disorders. Psychometric
properties reflect consistent differentiation of autism and ASD from non-spectrum
individuals, with less reliable differentiation of autism from ASD (Lord et
al., 2001, 2008).

Practitioners should
consider the following points when using of the ADOS in clinical and school
settings.

1.It is important to distinguish between an ADOS classification and an
overall diagnosis of autism. The ADOS is intended to be but “one source” of
information used in making a diagnosis of ASD. Because coding is made from a
single observation, it does not include information about onset or early developmental
history. ADOS algorithms include items coding social behaviors and
communication but do not offer an adequate opportunity to measure restricted
and repetitive behaviors (though such behaviors are coded if they occur). This
means that the ADOS alone cannot be used to make complete standard diagnoses.

2.The
goal of the ADOS is to provide standardized contexts in which to observe the
social-communicative behaviors of individuals across the life-span in order to
assist in the diagnosis of autism and other ASD. It provides information only
on current behavior and was not developed to measure changes over time.
Therefore, the ADOS domain or total scores are not a good measure of response
to treatment or of developmental gains, especially in the later modules (Lord
et al., 2008).

3.The usefulness of the ADOS
is related to the examiner’s clinical skills and experience with the
instrument. Training and practice in administering the activities, scoring, and
observation is required. The ADOS should be administered by an experienced
clinician with appropriate training who can use both quantitative and
qualitative information to form a clinical impression from the standard
activities.

4.Studies suggest that
clinical populations for which the ADOS is used may be substantially different
from the research samples on which it was normed. As the authors caution, the
instrument is not meant to be used as a “stand-alone” assessment. Supporting
information from a developmental history, additional observational information
or a detailed parent interview are needed for a comprehensive diagnosis. This
is especially important in any clinical and school settings where children with
various other developmental or behavioral disorders are referred and evaluated.

5.Agreement between clinical
diagnostic decisions and standardized diagnostic measures is difficult for
children with less typical presentations than classic autism. As a result,
diagnostic measures are likely to have difficulty with specificity and
sensitivity for children with ASD who do not present with classic features of
autism. Further research on the ADOS is needed with children who have an ASD
other than autism and with a broader range of children typically seen in
clinical and school settings.

References

Akshoomoff, N, Corsello,
C., & Schmidt, H. (2006). The role of the Autism Diagnostic Observation
Schedule in the assessment of autism spectrum disorders in school and community
settings. The California School Psychologist, 11, 7-19.

Tuesday, January 3, 2012

Autism Speaks, the world's largest autism
science and advocacy organization, has released its annual list of the 10 most
significant science achievements to have impacted autism during the previous
year. Every year, Autism Speaks documents the progress made toward its mission
to discover the causes and treatment for autism spectrum disorders (ASD), and
identifies the Top 10 Autism Research Achievements of the year. Autism Speaks’
Top Ten list includes discoveries on how frequently autism recurs in families and
the extent to which “environmental,” or non-genetic, influences, increase the
risk of autism in those who are genetically predisposed to this developmental
disorder. These important results continue to shape the future of autism
research for 2012 and beyond.

The 2011 list reflects the exponential
rate of discovery in autism research, supported by the joint commitment of
government health agencies and private organizations such as Autism Speaks in
supporting this vital work. With input from Autism Speaks' Scientific Advisory
Committee (SAC), Autism Speaks science staff culled through thousands of
publications to arrive at these choices. “These outstanding scientific advances
are changing the way we think about autism and its causes,” said SAC member Gary
Goldstein, M.D., president and chief executive officer of the Kennedy Krieger
Institute. “From the game-changing twin study to the emerging clues on
environmental risk factors, these studies highlight the important role of
gene-environmental interactions in autism.”

“Not only has the research community
continued to make significant progress towards effective treatments, 2011
offered some game-changing discoveries that help us understand underlying
causes of ASD,” says our Chief Science Officer Geraldine Dawson, Ph.D. “Some of
these discoveries will have direct and immediate impact on quality of life of
people with autism.”

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The objective of bestpracticeautism.com is to advocate, educate, and informby providing a best practice guide to the screening, assessment, and intervention for school-age children on the autism spectrum. Timely articles and postings include topics such as screening, evaluation, positive behavior support (PBS), self-management, educational planning, IEP development, gender differences, evidence-based interventions (EBI) and more. This site also features up-to-date information on scientifically validated treatment options for children with ASD and a list of best practice books, articles, and links to organizations. Designed to be a practical and useful resource, bestpracticeautism.com offers essential information for psychologists, teachers, counselors, advocates and attorneys, special education professionals, and parents.

Best Practice Guide

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“It is rare that one book can pack so many resources and easy to digest information into a single volume! Families, school personnel, and professionals all need the extensive, and up-to-date tips, guides, and ‘must-knows’ provided here. It’s obvious the author is both a seasoned researcher and practitioner – a winning combination.” - Dr. Debra Moore, psychologist and co-author with Dr. Temple Grandin, of The Loving Push: How Parents & Professionals Can Help Spectrum Kids Become Successful Adult

“Dr Wilkinson has done it again. This updated and scholarly Second Edition reflects important recent changes regarding diagnosis and services for students with Autism Spectrum Disorder. With its numerous best-practice suggestions, it is a must-read for school psychologists, school social workers, and those who teach in general and special education.” - Dr Steven Landau, Professor of School Psychology in the Department of Psychology, Illinois State University

“This book is an essential resource for every educator that works with students with ASD! The easy-to-read format is complete with up to date research on evidence-based practices for this population, sample observation and assessment worksheets and case studies that allow the reader to apply the information presented.” - Gena P. Barnhill, PhD, NCSP, BCBA-D, LBA, Director of Special Education Programs at Lynchburg College, Lynchburg, VA

“As a parent-advocate, Dr. Wilkinson's book is both comprehensive and easy to digest. It's comprehensive because it provides readers with a 10,000 foot view of the landscape. It's easy to digest because it is written in language that non-professionals can understand. If you read only one book, this is the one.” - Dan Harris, JD

"The author does a wonderful job presenting all of the data, facts, figures and statistics in a very structured layout that is straightforward, practical and convenient to access. With the rising incidence of children being diagnosed on the Autism spectrum, this guide should be required reading for all direct service providers who work with children in the school setting. On behalf of the Autism community I extend a sincere thank you to Lee Wilkinson for this impressive and most valuable resource.” - ParentCoachingforAutism.com

“Dr. Wilkinson has created an outstanding blend of academic research and practical application in a text that is so clearly written it is a pleasure to read for professionals and parents alike. This book fills an important need that has existed for years. Dr. Wilkinson has created an indispensable resource that should definitely be in each school’s professional library.” - Ally4Autism.com

"The author has expertly formatted the book and each chapter so that the reader is provided with an excellent resource of recent and relevant information pertaining to screening, formal assessment, and interventions with individuals in this population.” - Canadian Journal of School Psychology

“The uses and limitations of a variety of methods from psychometrics to observational assessments are clearly presented. Case studies give the reader exemplars of a range of assessments and the implications for learning in a highly readable way. Key issues are provided in summary boxes. Interventions include a detailed guide to promote skills in self-monitoring in the learner. In summary, this is an accessible book, of benefit to all those involved in the assessment and support of students with ASD.” - Educational Psychology in Practice

"School district administrators, attorneys, educators, and psychologists will want to have this guide available to them as a resource on 'best practices' in the field of ASD." -Diane Adreon, Associate Director, University of Miami-Nova Southeastern University center for Autism and Related Disabilities (UM-NSU CARD)

"This book provides a complete source for parents, educators, researchers and clinicians seeking information related to assessment and interventions available for individuals (mostly children) diagnosed with Autism Spectrum Disorders (ASD). Parents will benefit from reading this book as it exposes variety of issues to consider when seeking assessment and treatment for their children." -Journal of Autism and Developmental Disorders

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